That's what life seems to be like for me, at least! Constantly having to sort things out and keep on top of everything as well as spending hours at Perrins trying to placate Colin!

If only I could get enough of you to do some planned visiting - that would simply be great. Colin is so much more at ease when he has a visitor to talk with - other than me! But sometimes I just despair as he can have no visitors for days and days, and then they all come at once, which actually negates the benefit. It would be much better for Colin if we could spread the visiting out. And if some could visit in the morning that would be even better - breaking up the day is really beneficial. Don't be put off that Colin is sleeping though - shutting his eyes is his way of shutting the world out. Just initiate a conversation - mostly this will bring him into the real world. So go on, give it a go and just phone or text me first so that I can tell you if anyone else is planning to visit so we don't get too many at once. I know that some of you already to do, and that is great.

As I said in my last post, the really awful thing about the situation is that Colin appears to be totally blind now - he is just getting darkness, and frequently asks me to put the light on or to find his torch as he can't see a thing. He doesn't always remember he can't see, hence these two requests. Sometimes he does and reminds me how awful it is where he is as he can't see what's going on. Some of the carers are really good at giving a running commentary of what they are going to do and doing, and others are not. Thankfully there are much fewer of the latter, but it only takes one episode to really cause anxiety and then it's all downhill from there. The more anxious Colin is the more confused he gets and upset, and this is a downward spiral. Hence someone to be there and talk to that he knows can really calm the situation.

So, when you visit, remember to introduce yourself so that he knows who you are and that you are actually there and when you leave remember to tell him too! And if there is a lull in the conversation he will not know that you're still there because he can't see you, so try to keep talking (about anything!).

After an extremely long wait for an appointment, Colin had a CT scan last Wednesday at Worcester Hospital. This required a stretchered transport there and back, which was not great. Apart from anything else, Colin finds it difficult to lie straight because the muscles in his neck are very tight, as are the ones in his right leg. So there was much yelling and shouting throughout. He wasn't in the scanner many minutes and I think they didn't do a contrast scan, so I hope it was worth it! I don't know how long we shall have to wait for the results, but lets hope it sheds some light on the latest brain situation.

I hope in the next few weeks we shall set sight on the wheelchair. I have no idea how long it will be before we get the specially fitted recliner chair to replace the demo one which I'm hiring at the moment. The sooner the better really, as it will give Colin much more support.

And so here we are again, nearly time to go and make my meal and rush across to Perrins. And all the while I've been here this morning, like every other morning, doing chores, etc., I worry about how Colin is today in terms of anxiety and that I really ought to have been there!

Hello Jane,
As you know I have been following Colin's and your blog since Graham was diagnosed with PCNSL. Graham's diagnosis was 6 months after Colin's. We haven't met anybody else with the same diagnosis. So I feel great sadness for you both and alarm too. But especially concerned about the effect the situation has on you.
I just wanted to say I'm thinking of you
If you'd like to contact me on my email, away from the website, please do.
With best wishes,
Jane